Update: 5 months post CCSVI procedure
This is a short post to let everyone know I am doing well. Since January, I’ve been thinking I must be at the end of the shoulder pain, but it just kept lingering. Now for sure now I know it is almost over, because I’ve been doing windmills with my right arm for the last 5 days! My left shoulder still hurts, but it is close to mended too. Wednesday the pain was minimal, then Thursday afternoon my spasticity lifted and I felt so good I burst into 20 minutes of exercise. OK, it is barely exercise, just swaying to challenge my balance, calf raises, side stepping, but you have to somewhere. And I could walk without leaning on walls. It felt so great to be moving freely, the suddenness of the change was a surprise.
My physical therapist had mentioned the constant pain could release prostaglandins that might irritate the MS syndrome; after this improvement following a no-pain day, I anticipate faster MS improvements in the future. Of course Friday I leaned on my left arm too hard and activated the nerve pain again, grrrrr! Was more careful through the weekend, but energy level remained up, and Sunday Doug brought some boxes out of storage and I spent 4 hours sorting through treasures I had not seen in years. That was a big project I could not have done a week ago.
Many CCSVI events and news items occurred during March, I just put a few of the major ones in a box on my main page. It is getting beyond my ability to keep up with all the news, patient activism, and locations starting trials, scans or treatment. I was hoping for this – means the world-wide explosion of patient action is working. So more MS people can get tested and Liberated if they have blocked veins.
dear Sammyjoe, thanks for your update and keeping us all informed of your progress!
very glad you are doing better and hopefully the next update will show even more progress
because of your bravery!
take care, Dave
I am so happy to read you comments. I had the CCSVI procedure done this past Friday and have no idea what to expect or how soon. My main concern was a headache that I have had for years, and now that is gone. May we all continue to see progress and have so many more people to compare notes with.
Janet
Congrats Sammy Jo. So glad to learn that pain has left you and that you are feeling so energized. May it continue for you>
I am so glad to hear you are doing well and all the great changes that are happening for you i’m sure your family is so pleased as well , Sammy-jo thank you so much for all you have done to get the word out there for all who suffer from ms and there familys and also for the email and words of encouragement thanks again best of recovery for you and wishes of steady improvement sindy
Well I got the liberation operation on March 24 by Dr. Sal Sclafani in NY.Quite an experience.I feel slow improvements almost every day. I am clearer minded, Walking better off and on and my feet and hands are warmer more often. My extremeties have not gotten totally warm and stayed that way. Again it seems a little better every day.Also the 2x daily blood thinnerwhips me.Starting PT.I could walk farther albeit still like a duck. So I am going to keep watching I think i have had this a long time and will not get better overnite. But deffinate improvements. I only got ballooned and a special cutting balloon.Oh I do not need to get up from bed to pee for last week at all.
Congratulations! There’s hope!
Thanks for posting all of this encouraging information!
Amy